I've had episodic joint problems for years that were repeatedly diagnosed as tendoninits. Chalked up to lots of hardcore exercise even when I would wake up with random pain that would last weeks and suddeny disappear. My right arm started losing muscle some years ago, though I'm right handed. It was noticeable to others when pointed out (I had very, very muscular arms). A few years ago I started seeing an orthopedic doctor who ordered various MRIs and found nothing noticeable in my actual joints. He did notice the right sided weakness and wanted to rule out MS, so ordered a brain MRI. That freaked me out because I'd never even considered MS. The brain MRI showed numerou white matter lesions, but the neurologist said she didn't think I have MS because lesions not right pattern. A second neurologist at same practice also said no MS. They did nerve conduction test and found no issues (not sure if MS test or for some other reason). I was diagnosed with migraines, though I don't get many headaches. Around the same time all that was happening I was having visual issues. Blurry vision and night blindness. I figured it was age related. I went to an eye doctor who found my eyes were fine and I had 20/20 vision. I was referred to a neuroopthalmologist. He said it was neurological. But apparently did not think it was MS (it was an MS specialty clinic).
I hit my head last year and was diagnosed with post concussion syndrome. Did 9 hours of neuro psych testing. The neuropsychologist wanted me to get checked for MS. Again the right side weakness, along with other symptoms she saw. When I told her that two neurologists had said no MS last year, she asked me to get another opinion. I saw a neurologist that specializes in MS. He did not look at my MRI but said I did not have MS.
Lately I'm having the blurry vision again, plus all the joint pain, exhaustion, and as of last week, numbness in my chin. Now my bottom lip and bottom of my face (jaw) are numb. i have had slight numbness in sides of my face but that comes and goes. My chin has been numb since before Christmas. I've never experienced this before and at first thought I was imagining it.
I am not sure where to go from here. I contacted one of the neurologists and she said she could do a lumbar puncture. That sounds awful. But surely not as awful as this constant worrying.
What else could this be? I've tested negative for Lyme disease and other autoimmune diseases checked by blood sample. Many of the symptoms could potentially be migraine, but this new numbness seems like a fairly rare occurence in migraine.
The fact that an orthopedic doctor and a neuropsychologist both suspected MS seems weird and scary. And without looking at my MRI, how could the MS specialist possibly know I don't have MS?
I'm at the end of my rope.
I am truly sorry to hear you have been going through all of this! We have information on our website about other conditions to rule out, that you may find helpful: Other Conditions to Rule Out
. If the neurologist did not look at your MRI when you got another opinion, you may want to consider another opinion as well.
Also, you may want to consider getting referrals for specialists other than neurologists, who can rule out other conditions. This might include endocrinologists, rheumatologists, or infectious disease specialists. If you have any questions, please feel free to call 1-800-344-4867 to speak to an MS Navigator. Take care and good luck.
MS Navigator Abigail